Question 1

Can you eat or drink?

Accepted Answer

No I am 100% tube fed.

Question 2

Do you feel full or hungry?

Accepted Answer

Yes, I feel full and hungry like normal. I even feel cold or hot liquids as they go in.

Question 3

Do you still taste and smell?

Accepted Answer

Yes

Question 4

Does the trach hurt?

Accepted Answer

Not after a week or so during the healing phase. However, it can get irritated and itch.

Question 5

What is the ALSFSR Score?

Accepted Answer

The ALSFRS-R is an ALS disease-specific severity score reflecting motor impairment and functional deterioration. Measuring 12 aspects of physical function, ranging from one's ability to swallow and use utensils to climbing stairs and breathing. Each function is scored from 4 (normal) to 0 (no ability), with a maximum total score of 48 and a minimum total score of 0.

Question 6

Does ALS affect your hearing?

Accepted Answer

No, I hear just fine however, people assume i cannot when i use tech to speak so the raise there voice or try sign language until i stop them.

Question 7

If you cannot speak how do you communicate?

Accepted Answer

I use APPs on my phone which allows me to write my my thoughts, then use the speaker to verbalize them.

Question 8

Is having ALS painful (muscle cramps/soreness)?

Accepted Answer

I can only answer this for me. I do not feel any muscle pain as it relates to the muscle dying. However as the muscle dies that support joints i have pain similar to arthritis.  My hands scapula and back has been very painful lately.